PML

[Strawberry Shortcake]

Hi,

I've been on the board a long time, can't remember my old screen name... maybe Jennifer Sanders or Jenn Sanders.
Anyway, I know lots of us have been on TY for a while here, just had my 42nd infusion.

Has anyone on the board gotten PML? My dr says that they can pick it up on MRI before you even have sx and treat it. Any idea how they pick it up on MRI? I figure the treatment is something like some kind of blood exchange or something... anyone know?

Thanks!
Jenn

[LL60]

Someone posted just last month that they had PML; many of us asked them to post again and explain what they were going though, but I haven't seen anymore from them.

If you go on Youtube, and type in Tysabri and PML you will see videos from Angela starting from when she was first dx with PML and in the hospital getting treatment. It has been over a year since her dx of PML. In her words life is very hard for her now.

My doctor said on an MRI PML looks like MS on steriods. Everything lights up.

I have had 34 infusions.
210 cases of PML out of over 90,000 being on it just still doesn't seem like a high risk to me. But.....it does enter my mind now when for the first couple years it never did.

[Stacer]

PML

I remember you, Jenn! I just had 38. I didn't worry too much about PML for the first few years, but it's been on my mind lately. I just found out I was jc virus positive, so maybe that's why it's on my mind. I also only know Angela who has PML. It's difficult to imagine, but the chances of another relapse taking away my walking scares me more for the time being. I'm barely getting around now!

[KatieDidNOT]

If you go on Youtube, and type in Tysabri and PML you will see videos from Angela starting from when she was first dx with PML and in the hospital getting treatment. It has been over a year since her dx of PML. In her words life is very hard for her now.

I have both a Neuro and MS Specialist. I am allergic to Avonex and can't take Copaxone. I am very pro DMD, so was dismayed at this.

My MS Specialist ordered the JCV test on me and it was negative. I did not believe it, because I was in the military for so long. So my Neuro ran the test again, and indeed it was negative. Unbelievable, but true.

I saw the Neuro yesterday so that he could order my MRIs for next week, and after he was done peeling me off the ceiling, he talked me into trying Tysabri, in light that I was indeed Negative and my MS Specialist wants me to take it because I am Negative.

But after spending the last couple of hours watching Angela's story, Negative or not, there is no way on God's Green Earth that I am taking TY. I would rather not walk, because there are worse things than not being able to walk. And for me PML is on that list.

So big thank-you for introducing me to Angela. I could have made a HUGE mistake...glad she made the video...she is so inspirational and wish her the best.

Cheers--Katie

[Thinkimjob]

Watched that, too, Katie. Your drs sound like my doctors.
Nothing to worry about, Tysabri's just great, why wouldn't you be so glad there's this quite effective new treatment etc.
Not worried at all about little things oh like death and yet more disability.
Then again, none of them 'have' to take it.
I brought up the need for a JCV - blood test.

The MS specialist looked at me like I'd been reading something I shouldn't have been reading.

[LL60]

KatieDidNOT -
Sometimes we have to go with our gut feelings. We are not experts on the human body, but we are experts on our own bodies and I think having MS makes us even more intuned to our bodies. If watching the videos Angela made brought out the feeling "not on God's green earth" then it probably was sort of there anyway.

I think about PML sometimes and if I would then spend the rest of my like regretting my decision. I don't know. But, I don't think I would. Because these last 2 1/2 years have been so great for me on the Tysabri. If I hadn't been on it, I would not have the quality of life that I have. I am not looking forward to my May neuro app., because I am sure she will want me tested for the JC virus. And I know my insurance company is not covering people who are known to be positive. Which is why I have been refusing to be tested; but I think now I will have to be. I'll cross that bridge when I get to it.

No one has gotten PML being negative and in the first year. But I am guessing your neuro told you that.

But gut feelings mean a lot to me. Will you go on any other meds?

Remember all sorts of meds cause problems. Look at asprin. What a life saver. But look at the side effects. Look at tylenol. Not a good drug. It is so hard to know what to do in life. Eat eggs......not eat eggs. Find what works for you. Good luck to you.

[KatieDidNOT]

Sometimes we have to go with our gut feelings. We are not experts on the human body, but we are experts on our own bodies and I think having MS makes us even more intuned to our bodies. If watching the videos Angela made brought out the feeling "not on God's green earth" then it probably was sort of there anyway.

Absolutely, I have had that gut feeling since December. I think what has made it worse is 1) I had a severe allergic reaction to Avonex that was horrifying...I will spare the details, but stuff like that happens and 2) I have experienced some pretty bad reactions with other drugs before including 2 episodes of anaphylactic shock. So I do have to be careful.

I am being told it is a 50/50 shot at being JCV negative. But I read between 70-90% of the US population is JCV positive. Add 22 years of military service and I was certain I would be positive because I had been in so many "nasty" filthy situations.

So we did a second test. And it also came back negative. So...I am now convinced that I am miraculously negative. The question I asked my neuro was, "can I get PML being negative?" Answer was yes, but with my profile, I have approximately a 1/25,000 vs. 1/1,000 chance of it happening the first year. Not a bad number. But I still did not like it.

Then I saw Angela's videos...I watched them several times. I got some pretty severe chest pains last night and realized I was having a really bad anxiety attack. I am not afraid to die...I have said that in many other posts, but Angela has it pretty rough...even after the plasma infusions. I would not allow them to do that. They would have to just let me go. MS seriously pales in comparison to that. My heart just bled for her...I actually cried.

So after looking at the videos, it got me to thinking, I am a pretty happy camper, and most of my posts reflect that. Unless someone really fires me up. But I try to keep my glass half full and adapt as things come along. MS is not the worst thing in the World...I don't like it, wish I did not have it, but geez...I don't want PML. And I am not at a stage in my MS journey that Ty is a good option for me. I would be miserable and worried every single day. It is not worth that...and truly the light bulb went on last night. I realized that there are indeed some things I will not do to combat this disease right now. I am currently at 2.5 on the EDSS. But, maybe in the future...I won't discount Ty completely. But right now, I am just not ready.

So am I going to take any more DMDs? Oh yes. BG-12 has my name written all over it. I am still, and no matter what happens very PRO-DMD....even if I currently am not on one. I have not given up hope...I will never give up hope and am going to consider this is just a minor set-back.

Thinkimjob--Yes, our doctors are probably alike. I am so grateful that I have BOTH an MS Specialist and a neuro. My MS Specialist will drop me over this, seriously, she will tell me not to come back, but my neuro has stated he will stand by me no matter what.

We all have to do what is best for ourselves at the time. That is all we can do, and never look back. And again, thank you for letting me know about Angela...I needed that.

Cheers--Katie

[KatieDidNOT]

Oh one more thing.

LL60--please get tested. I know it is scary. But it is important.

I will keep my fingers, toes, and whatever else crossed that it is negative.

If not...remember other things are down the pipeline.

Katie

[LL60]

Reading your post about being in the military and being so surprised about being JCV negative, gives me hope. I just assume I am pos. too since for the last 23 years I have worked only with ill children. I have been thrown up on and coughed on and sneezed on each and every day. And I was raised in the military and lived all over and have been to Mexico a million times. I love street food from TJ. Not saying that is a higer risk, but just that I have been exposed to many many different people over my life time. Came back from Hawaii with a horrible virus 3 years ago.

I do need to be tested. Just afraid it could mean the end of my Tysabri journey in a good way. But I know it could all end in a bad way too. Yes, I have watched Angela's videos many times too. So that I truly understand my choice. And I am so sad every time I read the new numbers on PML cases.

I had a very rare reaction to Copaxone and almost died, so I understand how some bodies react to things.

There is a video on wimp.com that is a lecture a doctor with MS gives on diet and MS. She was on all the CRABS and Tysabri and continued to get worse and was in a wheel chair. Just changing her diet reversed a lot of things. I eat almost everything she listed. Except for kale. Don't like it. Have to bake it with tons of cheese and I think that defeats the purpose. I know there are a lot of med and alternative things out there. BG - 12 does sound very very good.

I would think your doctor would stand with you too, like your neuro. I think that is her lose if she doesn't. All the insurance companies talk about being a team, but I think lots in the medical profession still think their word is IT. They don't really want imput from you.

I figure if they order the test for me in May it will be this summer before I get the results. And I am very very careful about tracking down every little thing that happens to me. If I can't figure out the reason for something I will call my doctor pronto.